Page 6 - SPD Review Winter 2014

PeDRAs Annual Conference Recap

Energetic. Inspiring. Electrifying.

These were a few descriptors loating around the halls of the

Chicago Westin O’Hare Hotel November 7-9 as the 2014 PeDRA

Annual Conference got underway.

This second conference for PeDRA, SPD’s research off-

spring, brought together 110 investigators, clinicians, NIH repre-

sentatives, speakers and patient advocacy organizations to plan

collaborative research in pediatric dermatology. NIH funding

largely made possible the conference, which was also support-
Conference colleagues viewing Networking at the PeDRA Conference
ed by patient advocacy organizations and industry. “This year,
PHACE Syndrome poster.
we could literally see the fruits of everyone’s efforts over these

many months,” said Beth Drolet, SPD President. “In a research

world where we are too often told no, people were just awe- Speakers brought highly sought-after expertise that taken together really told the story

struck by all the promise and possibility that the new or ongoing of how to engage a professional community in collaborative efforts. With the conference

collaborative studies suggested.”
theme, “Designing quality collaborative, multi-institutional studies,” speakers enlightened

The conference blended investigators with complementary attendees on the challenges, keys and opportunities in setting up studies and collabora-

strengths and interests, enabling them to take on vital projects
“
together that would never be possible independently. Respected

leaders joined with early-career innovators to tackle study ideas
Some of this research was life-changing for our

and strategize how to launch or continue the projects. Repre-
organization. I think the researchers also saw that
sentatives of NIH’s National Institute of Arthritis and Musculo-

skeletal and Skin Diseases (NIAMS) worked alongside these
we advocacy people tap into a vital perspective ”

professionals. And, patient advocacy organizations showed
that can’t be left out of scientiic discovery.
their colors, not only participating in the weekend but providing

sponsorship dollars as well. “I was truly surprised and pleased

at the collegiality and participation,” said Karen Ball, President

and CEO of the Sturge-Weber Foundation, “and, to get in on the tive initiatives. This included some how-to’s, for example, how to effectively
incorporate

ground loor of some of this research was life-changing for our databases in setting up a collaborative. Speakers from both government (Ofice of Rare

organization. I think the researchers also saw that we advocacy
Diseases) and an existing collaborative network (Childhood Arthritis and Rheumatology

people tap into a vital perspective that can’t be left out of scien- Research Alliance [CARRA]) helped the group understand lessons learned, pitfalls and

tiic discovery.”
challenges.

continued on page 7

6 SOCIETY FOR PEDIATRIC DERMATOLOGY  www.pedsderm.net